This seemingly sensible caveat has come under scrutiny after Audrey Parker, 57, diagnosed with stage-four breast cancer, made a public plea for it be abandoned. She died (an assisted death) on November 1st, but was frustrated that in order to benefit from MAiD she had to make arrangements earlier than she would have liked. However, being unable to guarantee that her mental capacity would be sustained during the next few months, she had to make a decision while still able to provide late stage consent. In her case it was quite possible that cerebral metastases, or intercurrent illness, would have rendered her confused or delirious. The end result was that she had a ‘good death’, but was possibly deprived of some life.

Critics of assisted dying will see this as a very good example of why we shouldn’t legalize it in the UK. How can you pass a law that ‘forces’ people to die before their natural time?

Late-stage consent seems a good, safe idea. It has parallels with other medical interventions or procedures, where the patient’s final ‘permission’ is requested even when consent (or in this case an active request) has been provided earlier on. It ensures that only a patient who is absolutely certain on the day will have an assisted death. But this case shows that laws cannot accommodate all circumstances. There will always be situations that push at the boundaries. Those who support AD will say that the greater good is still served. More people are dying in Canada according to their own wishes, at a time of their choosing. Although apparently forced into a corner, Audrey Parker made a decision and was not coerced.

What if the need for late-stage consent was removed in diseases where cognitive performance was likely to be diminished over time? If a person loses mental capacity, they are unable to exert autonomy at the moment of death, and must hand over the final decision to another. That person, be it a loved one or a professional, will have to make the decision and initiate the final process. This sounds more like euthanasia. However clear the instructions given by the dying person – e.g. ‘when I lose my mind, please make sure my death is not prolonged, please make sure it is assisted’ – a difficult and onerous judgment has to be made by the advocate. The rate of progression of a person’s disease cannot always be predicted. There will be fluctuations. No-one knows how it is going to go, if there will be agitation, acute pain or a gentle retreat into coma. Identifying the point at which the dying person’s wishes should be enacted will be subjective. To ask another to do this, however strongly they agree with the dying person and however much they want to protect their stated wishes, appears too much.

The Canadian newspaper Globe and Mail, which has covered MAiD in detail, obtained a draft report by the Council of Canadian Academies into how to manage the problem of mental incapacity in the era of MAiD. The person with worsening dementia would be the most common presentation. Here, someone with their faculties intact will make an advance decision that their death be assisted when they have lost capacity and appear close to death. Again, this requires others to make a judgment on symptom severity and timing.

The draft of the partial report analyzes three scenarios for advance requests: Cases such as Ms. Parker’s, where patients have already been assessed by two doctors and approved; cases where patients have been diagnosed with dementia; and cases where people have not received a diagnosis but want to make an advance request for medical assistance in dying (MAiD), just in case.

“The complexity of each individual [advance request] for MAiD would be influenced by the timing of a request in relation to its implementation. [Advance requests] prepared shortly before MAiD was to be provided (e.g., when a patient already met eligibility requirements) would involve much less uncertainty than [advance requests] for MAiD written well in advance of the point at which they might be implemented,” the draft says.

Uncertainty is the issue. How to make decisions regarding a situation that has not yet developed. For people who do not have a diagnosis yet, the ‘just in case’ group, applying for MAiD seems unrealistic. For those with a condition that will predictably cause a loss of mental capacity, it would seem discriminatory for them to be exclude from MAiD. However, to maintain safety, this seems likely to continue. The Dying with Dignity Canada website, in its frequently asked questions page, is clear:

Can one make an advance request for AD?

In Canada, advance requests for assisted dying are not allowed. It is forbidden for a clinician to proceed with administering MAiD without first obtaining final consent from the patient.

[ ] The ban on advance requests has had serious implications for individuals who have been approved for MAiD and plan to die in the next days or weeks. In some cases, patients choose to reduce or even refuse pain medication out of fear that they will be too impaired to provide final consent for MAiD. For some, the pain associated with their medical condition is too great, and they must effectively abandon their request for MAID in order for their pain to be kept under control.

and,

Can a person with dementia qualify for AD?

[ ] A person with a capacity-eroding condition such as dementia might lose capacity before they satisfy one or more of the other eligibility criteria in the law. For example, the person might already be suffering intolerably, but they may not be in an advance state of irreversible decline, or their natural death may not yet be “reasonably foreseeable.” By the time they have reached an “advanced state of irreversible decline,” they may no longer be capable of providing consent for MAiD.

It seems clear that a law passed to ease suffering might, in some situations, cause distress, a sense of ‘hurry’ and occasional paradoxes, such as a patient foregoing pain relief in order to maintain capacity. A mess? Enough to discourage supports of assisted dying in the UK? Quite possibly.

But MAiD has been a success, in a manner of speaking. As Kelly Grant writes in the Globe and Mail,

…1,525 people hastened their deaths with the help of a doctor or nurse between July 1 and Dec. 31, 2017, up 29.3 per cent from 1,179 such deaths in the first half of last year.

There is clearly a need for MAiD in Canada, judging by its uptake. It is providing comfort to a highly vulnerable group who would otherwise lose control of their final hours. Do the ‘exceptions’ justify a change in the law such that MAiD can be extended to those without capacity on the day of their planned death? Is it justifiable that a those who ‘lose their minds’ are deprived of something that those who don’t can benefit from? Or is MAiD, still in its infancy, and a rare thing in a global perspective, too delicate to meddle with?